WHEN I was young, I was fascinated by the Hans Christian Anderson fairy tale about the emperor who pays a lot of money for new magic clothes, which can only be seen by ‘wise’ people. All the townspeople praise the magnificent clothes, but it takes a young boy to point out that the Emperor isn’t wearing any clothes at all.
That story proves that ‘seeing isn’t always believing’. I have an ‘invisible illness’. You will not always see my pain, but it’s very real to me.
However, I have been made feel that my illness is non-existent, that it is ‘all in my mind’, and people have questioned its existence. My injury can’t be seen, so it can be difficult for someone to understand what life is like living with chronic, illness-related pain and debilitating fatigue.
The concept that credibility only comes from witnessing something goes against what we know about the most precious things in life: some of which cannot be seen with the naked eye, such as love, compassion, trust. Even the air we breathe is not perceptible, yet we never question that our next breath is coming; we just trust.
So why do we not trust or believe people when they say they are in persistent pain? I have heard the phrase, all too often, ‘you look great, how can you be in pain. Are you in pain now’? When I answer ‘yes’, more questions follow. ‘Where are you in pain? Why are you in pain? How are you in pain?’
It seems contradictory to people that I could look a certain way, or even have a smile and a positive outlook, and yet still have pain daily.
With any invisible illness, it is definitely a drawback not having any visible cue to suffering. I look normal; I don’t show physical scars, nor do I bleed, to show the internal hurt and torturous pain that I live with daily.
If chronic pain was given the same respect as other medical conditions, then patients like me would be treated differently, and believed that our pain is real, and not have to somehow prove it.
Chronic pain is an epidemic, yet we have no cure, we have very little investment into research, and, sadly, pain patients are not getting access to effective treatments. We need to demand a comprehensive national strategy for dealing with this serious public health issue and to improve patient care outcomes.
I have had pain for as long as I can remember. I have spent so much of my time and energy over the years chasing a diagnosis for my pain. I believed that I would be taken seriously, and treated appropriately, if I had a ‘name’ for the cause of my pain. For many years, I went from doctor to doctor, explaining my pain and looking for answers that, sadly, weren’t forthcoming.
I went to great lengths to comprehend why I was suffering and why this elusive feeling wasn’t leaving my body. I dreamt of a future with a proper diagnosis, as I believed that, then, finally, I would be able to get the treatment I needed to feel ‘normal’. Sadly, this wasn’t to be the case.
My first real diagnosis was of spinal stenosis, in 2007, and I continued to have more sporadic pain in more areas of my body. Scans revealed small disc osteophytes, or bone spurs, on my coccyx (tailbone) that were putting pressure on my spinal cord and nerves.
I can only explain the pain as weeds popping up in a lawn. I would do my best to keep the grass mowed and to keep myself well, but, without warning or any real pattern, the pain weeds would appear and continue to grow, and I could never seem to get to the root of the problem.
In her desperate quest to cure the pain, Andrea was examined in the UK, where she was diagnosed with spinal stenosis. Then, I got a diagnosis of a rare neurological disorder, called chiairi malformation 1, in 2013. There isn’t a cure for this debilitating condition. I knew something had to change and that change had to come from within me. I decided to take time out of my day-to-day working life to deal with my illness more holistically and that self-care journey has changed my life for the better.
Sadly, another diagnosis followed, in 2015, as I discovered (during a diagnostic, tilt table test) that I had a condition called postural orthostatic tachycardia syndrome, or POTS.
So, while I battle with all these different, big medical labels, I still look the same on the outside and I am treated as ‘normal’. So, when I was on my big search for a diagnosis, I felt that once I could say to people that I had a creditable label for my pain, it would make it somehow better — it hasn’t, nor has it really changed anything, or brought my soul or my body the satisfaction, or pain-free solutions, I hoped for.
I realised I needed to become an empowered patient. I began to explore alternative ways of managing my pain.
Everyday, I make it my intention to stay positive mentally, even when my body isn’t always cooperating the way my mind would like. Each day, I choose to embrace life and I push through the pain and fatigue, which others can’t see and which they doubt that I am suffering. I have changed my life and, as part of my self-care, I use hypnosis, health affirmations and positive self-talk, daily, among other tools, in my own pain-management plan. I trained as a clinical hypnotherapist, which helped me explore the power of the mind in healing my body, and I even challenged the language of pain I was using daily. I commit fully to my wellness routine and create a positive mindset, which helps me live the best life I can, daily.
I am determined not to let my invisible illnesses and persistent pain define me. The pain has made me the person I am today, it has informed decisions I have made for the type of work I want to do. I have compassion and empathy for others, who are suffering in silence, like myself.
Sometimes, it isn’t invisible to me when I meet with people who suffer daily; I can see the pain in their eyes, and my loved-ones have said that, despite my smile, they can see my pain, too.
So, maybe, like the Hans Christian Anderson story, the collective majority will have the wisdom and insight of the young boy to see the truth in my eyes, and see the veil of pain that is often undetected on the faces of those we meet everyday.
It is my hope we can remove the blinders and allow people in society who have an invisible illness to, firstly, be believed, and to, secondly, be treated with integrity, compassion and understating, and to be trusted that their pain is real, even if it can’t be seen and, finally, that access to proper treatment for chronic pain be a basic human right for all in our nation.